I Don't Believe 20% of People Have Tinnitus

[Ed209]

We had donations boxes in the dining areas for certain conditions and diseases - for research and care. At the end of each month, each box had a lot of coins and a little paper. Many donated for the care aspect. We never had a box for tinnitus and hearing. There's thousands of hospitals worldwide. Imagine a donation box for tinnitus and hearing in each hospital's dining area across the globe. This would also bring awareness and might make healthcare workers and administrations take more notice to our conditions.

Greg you are obviously a compassionate man as this shines through in your posts, and I also really sympathise with your own suffering. However, what you've said is largely wishful thinking. The status quo will not change until people do something about it.

Imagine a donation box for tinnitus and hearing in each hospital's dining area across the globe.

This would be amazing but I can never see something like this happening. For it to be a true, universal fund, we would need a worldwide organising body to orchestrate it. However, in the real world, tinnitus sufferers show little to no interest in these kinds of things, so you would have no chance of getting non-sufferers to help.

I sound like a broken record but it's up to the tinnitus community to shake things up. We need to make the world see how bad this condition can be and then do something about it. Talk is cheap, and unfortunately, that's all the tinnitus community seem to do.

 

[Julien87]

That stat makes no sense to me, everytime I mention my tinnitus I have to explain what it is, it seems no one knows about it except those few I know who have it.

If it's true that 20% of population have tinnitus like ENTs and some stats claim, shouldn't its name be way more known among people?

In French press articles, when they use this figure about the French population, they actually also include the people who have tinnitus "from time to time"...

 

[PDodge]

Ear buds, the uprising of mega loud EDM festivals?

I am starting to notice that some people just might have "stronger" ears than others (if that makes sense)...some people will get T over the one loud bang...whereas others it won't affect their ears at all. Just my thoughts.

Makes me sad, I had really tough ears and never

20% is incorrect. About 10% have some Tinnitus, but only 2% are severe cases close to disability. It is about 2 million people in the USA.

But even this data seems to be exaggerated.

But what does that even mean? Parts of my T ar

Greg you are obviously a compassionate man as this shines through in your posts, and I also really sympathise with your own suffering. However, what you've said is largely wishful thinking. The status quo will not change until people do something about it.



This would be amazing but I can never see something like this happening. For it to be a true, universal fund, we would need a worldwide organising body to orchestrate it. However, in the real world, tinnitus sufferers show little to no interest in these kinds of things, so you would have no chance of getting non-sufferers to help.

I sound like a broken record but it's up to the tinnitus community to shake things up. We need to make the world see how bad this condition can be and then do something about it. Talk is cheap, and unfortunately, that's all the tinnitus community seem to do.

I'm clueless when it comes to this but all night I've been trying to think of ways to get a message out around my town

 

[Ed209]

I'm clueless when it comes to this but all night I've been trying to think of ways to get a message out around my town

If you're on social media that's an easy way to start, but another good way (in my opinion) would be to write to some local schools - or visit some in person - and ask them if you (or someone else) could do a talk on the dangers of noise exposure. My wife did this at the school she teaches at.

You could also try and get a piece written in a local paper; write to a senator/mp; write a book about your personal struggle (self publishing is easy nowadays); create an online petition and get as many people as you can to sign it; talk to friends and family and be open about the suffering it's caused you.

When I first signed up here I never realised there was a stigma, but there is. I've always been open about my tinnitus to everyone I know, but I realise everyone's personal situation is different. However, we need to smash this stigma into non-existence, as it serves no purpose.

 

[Greg Sacramento]

@Ed209 I personally agree with anything that you said in your above post. With my suffering I can't even take a bath without assistance. I need assistance when going to medical appointments and so forth.

If I wasn't in pain or had limited mobilities, I think that I could convince my former healthcare employers (they own 75 hospitals combined) to add tinnitus and hearing donations boxes. This would mean trips to San Francisco and LA which I'm not capable of doing.

 

[PDodge]

If you're on social media that's an easy way to start, but another good way (in my opinion) would be to write to some local schools - or visit some in person - and ask them if you (or someone else) could do a talk on the dangers of noise exposure. My wife did this at the school she teaches at.

You could also try and get a piece written in a local paper; write to a senator/mp; write a book about your personal struggle (self publishing is easy nowadays); create an online petition and get as many people as you can to sign it; talk to friends and family and be open about the suffering it's caused you.

When I first signed up here I never realised there was a stigma, but there is. I've always been open about my tinnitus to everyone I know, but I realise everyone's personal situation is different. However, we need to smash this stigma into non-existence, as it serves no purpose.

Thanks for your input I'll see what I can get going here! Again it's much appreciated

 

[Jazzer]

We need to make the world see how bad this condition can be and then do something about it.

I agree.
I donate whatever I can.
But if the whole of the Tinnitus community did the same it would still be just a piss in the ocean.
I talk - probably endlessly - to anybody I can get to listen.
I try to educate people, starting with my next door neighbour, up to millions on Facebook.

How else do you imagine we can "make the whole world see how bad this condition can be?"

The methods above are simply not going to crack it.
We need a good author, a film maker, a different dimension.
I know that we have all wracked our brains, but as yet have found no answer.
Is there an answer?
As we know - those without this wretched affliction will not care, unless their dad, grandad, brother, sister, spouse, is seriously affected.
Then they feel for us.

The two questions I have are:

Is there an answer to raising Tinnitus awareness?
And the bigger question, is there an answer to effectively treating or curing Tinnitus?

 

[Greg Sacramento]

If you're on social media that's an easy way to start, but another good way (in my opinion) would be to write to some local schools - or visit some in person - and ask them if you (or someone else) could do a talk on the dangers of noise exposure.

My wife isn't a teacher, but her profession is in child wellness for a school district. Hearing loss/ tinnitus is a problem. Many problems take place off the campuses, at home. Parents will pick up their children when school is getting out with very loud music coming from their vehicles. Sometimes it begins with the parents. Notices on hearing are sent home to parents, assemblies are held, discussion is made on parent's night.

 

[Bam]

Is there an answer to raising Tinnitus awareness?

Awareness would spike for a few weeks and maybe a few million bucks would be raised if very well known and likeable public figure was to get T so bad that they ended their life and made it very clear the incessant noise was to blame.

Unfortunately this is hugely unlikely because rock stars et al don't want to be seen as wimps. So the ones that do kill them selves keep quite about their T suffering and we never find out that it pushed them over the edge along with drug use which then of course gets the blame because it's far
more fitting and 'rock and roll' to their memory than T.

I would be very interested to know if Chris Cornell for example had 'ringing ears'.

 

[Ed209]

We need a good author, a film maker, a different dimension.

Talking about films, A Star is Born, comes out tomorrow and features tinnitus in a debilitating aspect. It's got good reviews as well.

The methods above are simply not going to crack it.

The above methods (and many more) haven't really been given any effort, which is always a good start. That's my point. Nowhere near enough people show any interest, so of course we'll never crack it when over 99.99% don't want to do anything to help (this isn't aimed at you jazzer or anyone in particular, but the community at large).

As we know - those without this wretched affliction will not care, unless their dad, grandad, brother, sister, spouse, is seriously affected.
Then they feel for us.

Unfortunately, from my experience, even this doesn't seem to motivate people, or maybe I should say, it only motivates the tiniest minority.

Nothing seems to budge anyone into action, and yet every time I log on here people are discussing what should be done, relentlessly. It's like we're all waiting for the tinnitus fairy to come and help.

 

[Jazzer]

Nothing seems to budge anyone into action,

Yes - but what action can we take ???
That is entirely my point.
There ain't no obvious action to take?

 

[Ed209]

Yes - but what action can we take ???
That is entirely my point.
There ain't no obvious action to take?

Any action. Anything that gets the message out there, and anything that generates money.

Start with some fundraisers around the world aimed at research like most other debilitating conditions do. If everyone did their own local fundraising event around the world (raffles, coffee mornings, auctions, selling unused items, charity runs, charity climbs, etc, etc) it would compound the total and would create an enormous amount of money. It would also create a ton of awareness. People would immediately think 'damn, I hope I don't get that tinnitus thing, there seems to be fundraising everywhere, so it must be really bad'. The awareness message would get spread just as much as any money would go towards research/care, so it would be a win win.

The reality is that most would rather not share fundraisers or join in with them. They would rather moan that there is one in the first place, paradoxically, and then in the next breath complain that nobody is doing anything to help them! Tinnitus groups don't want to share anything that mutually benefits everyone either; there is absolutely no unity at all. There isn't anything else of real note being done on a large scale. There are small pockets of people trying to do things, like David Stockdale (BTA), and Tinnitus Hub, etc. And yet when David came on here he was shot down in flames. It's hypocritical beyond belief. One person with absolutely no integrity of his own tried to discredit him instead of trying to help, and this my friends sums up the tinnitus community. Apathy and self-destructiveness at its finest.

 

[85dB T]

Technically speaking, tinnitus is an hallucination. Technical people view hallucinations as mental illness.

Doctors hopelessly treat tinnitus with hearing aids, TRT, CBT and anti depressants, thinking it's being addressed appropriately. (?)

Eg.: I met an older gentleman at a fast food place. He couldn't hear me, he had hearing aids. I said no problem me too, do you also have tinnitus? He immediately said yes, horrible, that he couldn't sleep. I asked if he uses white noise. He said he can't hear white noise without hearing aids. (Then his wife said he's taking lipoflav*noids which are helping... that the doctor recommended). Poor guy. I could tell he was suffering greatly. I gave his wive some things to go*gle like FreqTherapeutics.

Point is the medical profession isn't motivated to do anything. Except for the VA with all the IED exposures. (This is an issue, you can't function as an alert soldier without all five senses functioning at full capacity. Wearing earplugs while stalking is a huge disadvantage).

The care the VA gives veterans is a clue to how much concern there is within the government to find a cure. Preventing future sound exposure with wearable technology is something I read they are working on. We're just a small population of people needing a cure that no one has motivation to care about. Imho.

 

[Ed209]

Technically speaking, tinnitus is an hallucination. Technical people view hallucinations as mental illness.

Doctors hopelessly treat tinnitus with hearing aids, TRT, CBT and anti depressants, thinking it's being addressed appropriately. (?)

Eg.: I met an older gentleman at a fast food place. He couldn't hear me, he had hearing aids. I said no problem me too, do you also have tinnitus? He immediately said yes, horrible, that he couldn't sleep. I asked if he uses white noise. He said he can't hear white noise without hearing aids. (Then his wife said he's taking lipoflav*noids which are helping... that the doctor recommended). Poor guy. I could tell he was suffering greatly. I gave his wive some things to go*gle like FreqTherapeutics.

Point is the medical profession isn't motivated to do anything. Except for the VA with all the IED exposures. (This is an issue, you can't function as an alert soldier without all five senses functioning at full capacity. Wearing earplugs while stalking is a huge disadvantage).

The care the VA gives veterans is a clue to how much concern there is within the government to find a cure. Preventing future sound exposure with wearable technology is something I read they are working on. We're just a small population of people needing a cure that no one has motivation to care about. Imho.

Absolutely 85dB, everybody needs to up their game. If we make more of a stink then it becomes harder to ignore.

On a lighter note, is anyone planning on seeing A Star is Born? I'm gonna go over the weekend I think. Hopefully, tinnitus is featured for more than 5 minutes.

 

[Bam]

Any action. Anything that gets the message out there, and anything that generates money.

Start with some fundraisers around the world aimed at research like most other debilitating conditions do. If everyone did their own local fundraising event around the world (raffles, coffee mornings, auctions, selling unused items, charity runs, charity climbs, etc, etc) it would compound the total and would create an enormous amount of money. It would also create a ton of awareness. People would immediately think 'damn, I hope I don't get that tinnitus thing, there seems to be fundraising everywhere, so it must be really bad'. The awareness message would get spread just as much as any money would go towards research/care, so it would be a win win.

The reality is that most would rather not share fundraisers or join in with them. They would rather moan that there is one in the first place, paradoxically, and then in the next breath complain that nobody is doing anything to help them! Tinnitus groups don't want to share anything that mutually benefits everyone either; there is absolutely no unity at all. There isn't anything else of real note being done on a large scale. There are small pockets of people trying to do things, like David Stockdale (BTA), and Tinnitus Hub, etc. And yet when David came on here he was shot down in flames. It's hypocritical beyond belief. One person with absolutely no integrity of his own tried to discredit him instead of trying to help, and this my friends sums up the tinnitus community. Apathy and self-destructiveness at its finest.

The problem here is that if you have mild T that doesn't affect your life one way or another why would you care?.......And at the other end of the scale you have the people who most need a cure and awareness of their miserable existence but are so tired, depressed, anxious, knackered, infuriated and utterly bereft that they've been left to live in absolute hell.

Let's be honest....People can treat this like just an annoyance all they like but the reality is that a lot of us are too f***ed to organise anything. Some of us need literally putting down this has got so surreally awful. We are living with a condition that is basically daily torture. We are not capable of sleeping properly, a basic human necessity! Let alone arranging a fundraiser. Our nerves and spirit are shot to shit. We're floating in a dark alien expanse like lonely terrified astronauts who have become untethered from the ship......It's the equivalent of asking a cancer patient to climb Kilimanjaro for research while they're in the middle of gruelling chemo.

 

[Ed209]

Let's be honest....People can treat this like just an annoyance all they like but the reality is that a lot of us are too f***ed to organise anything. Some of us need literally putting down this has got so surreally awful. We are living with a condition that is basically daily torture. We are not capable of sleeping properly, a basic human necessity! Let alone arranging a fundraiser. Our nerves and spirit are shot to shit. We're floating in a dark alien expanse like lonely terrified astronauts who have become untethered from the ship......It's the equivalent of asking a cancer patient to climb Kilimanjaro for research while they're in the middle of gruelling chemo.

Bam, to be honest with you buddy it takes no more effort than the post you just made. You don't have to do anything active, but others who are capable could take that route if they wanted. I was just giving examples. What you just wrote could have gone onto gofundme and in two clicks you're up and running. Then all it takes is our fellow community to get onboard and share it far and wide! The problem is that hardly anybody will mate. People post all day on here so they can definitely create some awareness posts on social media, and/or share some fundraising campaigns.

TT is a bubble, so we are preaching to the quire here. Nobody else in the wider world has a clue.

 

[Ed209]

The problem here is that if you have mild T that doesn't affect your life one way or another why would you care?.......And at the other end of the scale you have the people who most need a cure and awareness of their miserable existence but are so tired, depressed, anxious, knackered, infuriated and utterly bereft that they've been left to live in absolute hell.

My tinnitus isn't mild! I had mild T for about 14 years. Nothing pisses me off more than people who insinuate that my T is mild; it is far from it. This shit took my former livelihood and passion; do not underestimate the impact it has had on my life. It takes years to get used to it at severe levels, and I'm aware that none of us can ever truly know what anybody else is going through. That is why I don't understand why only 0.2% of the tinnitus community care enough to do something about it. It baffles me big time.

I asked some to share it and they said no. How hard is that? Takes literally two seconds, but believe it or not, most people are resistant to help.

I want you to feel better. I'm honestly not here to argue with people. My intentions are good.

 

[Bam]

My tinnitus isn't mild! I had mild T for about 14 years. Nothing pisses me off more than people who insinuate that my T is mild; it is far from it. This shit took my former livelihood and passion; do not underestimate the impact it has had on my life. It takes years to get used to it at severe levels, and I'm aware that none of us can ever truly know what anybody else is going through. That is why I don't understand why only 0.2% of the tinnitus community care enough to do something about it. It baffles me big time.

I asked some to share it and they said no. How hard is that? Takes literally two seconds, but believe it or not, most people are resistant to help.

I want you to feel better. I'm honestly not here to argue with people. My intentions are good.

Hey Ed. Wasn't saying yours was mild mate. Apologies if that was how it read.

........I get your points raised above but ironically our own stoicism and strong desire to live even in such an awfully compromised state is propagating the view we look to dispel. And that is how the entire narrative of 'ringing ears' as merely an annoyance goes on and on. If you're not dead it can't be that bad. Nobody sees how dead people are on the inside I'm afraid.

 

[Bam]

Bam, to be honest with you buddy it takes no more effort than the post you just made.

That's simply not true Ed. Some of us have really bad PTSD and that makes reaching out to people almost impossible. Especially when we are reeling from loss of partners, jobs, homes, lifestyles, debt etc. When you have taken a massive hit in life and can't see any hope at all, drawing attention to yourself and your problems is very hard.

 

[85dB T]

I had mild T for about 14 years. Nothing pisses me off more than people who insinuate that my T is mild; it is far from it. This shit took my former livelihood and passion; do not underestimate the impact it has had on my life. It takes years to get used to it at severe levels....

You Sir, are telling the truth. Amen, Amen and amen.

This shit took my former livelihood and passion;

If you haven't experienced the above it's not worth explaining.

It takes years to get used to it at severe levels,

Took me four to five years just to begin thinking about living the future.

I had mild T for about 14 years.

Mild and moderate T are not obstacles anymore than "eye floaters". When I had moderate T I thought this forum was full of whimps. Well, I'm here now. Severe T will dominate your life.

***Anyone reading this don't lose heart.*** You still have a life to live and be thankful for. It just won't include silence and will require extra effort. But this is true with or without T. Life is challenging for most people. Our challenge is T.

(I now accept T and thank God for my life!)

 

[Jazzer]

I do get your point @Ed209 - but the awareness that running a coffee morning or a 'go fund me' event might raise, is not the kind of awareness I am thinking of.

We must bring civilians as closely as possible into the actual experience of the Tinnitus nightmare.
I suppose the documentary route is the best idea I can think of, but even then we have the problem of getting them to watch it, instead of something like 'East-Fucking-Enders !!"

A couple of years back I helped put on a concert in aid of the 'Macmillan Nurses,' at which my band played.
The total cost to me was £480, and we raised over £1200 in an evening.

I no longer have that musical skill at my disposal,
neither the money, nor the health.

My feeling is that pretty well all significant achievement comes originally from aptitude.
You cannot become a great artist, musician, jazzer, engineer, linguist, anything else, because you just want to.
Business promotion, charity promotion, publicity and advertising all depend on talented people doing what they are good at.
We need to make a real telling impact.
This is not simply passing the buck.
It is looking for a cogent answer.

 

[Jazzer]

(I now accept T and thank God for my life!)

I'm with you all the way "85dB T,
except I never found any god to thank.

 

[JohnAdams]

I do get your point @Ed209 - but the awareness than running a coffee morning or a 'go fund me' event might raise, is not the kind of awareness I am thinking of.

We must bring civilians as closely as possible into the actual experience of the Tinnitus nightmare.
I suppose the documentary route is the best idea I can think of, but even then we have the problem of getting them to watch it, instead of something like 'East-Fucking-Enders !!"

A couple of years back I helped put on a concert in aid of the 'Macmillan Nurses,' at which my band played.
The total cost to me was £480, and we raised over £1200 in an evening.

I no longer have that musical skill at my disposal,
neither the money, nor the health.

My feeling is that pretty well all significant achievement comes originally from aptitude.
You cannot become a great artist, musician, jazzer, engineer, linguist, anything else, because you just want to.
Business promotion, charity promotion, publicity and advertising all depend on talented people doing what they are good at.
We need to make a real telling impact.
This is not simply passing the buck.
It is looking for a cogent answer.

I believe aptitude can be developed.

 

[Jazzer]

I believe aptitude can be developed.

Well - of course - you're 'apt' to think like that John.

(.....sorry......)

 

[85dB T]

I'm with you all the way "85dB T,
except I never found any god to thank.

Your innate 'aptitude' to overcome came not from your conscious self but from within. The God you need to thank is in your heart.

My feeling is that pretty well all significant achievement comes originally from aptitude.

Agree. And I hope some brilliant mind with "extraordinary God given aptitude" realizes he can make a fortune and do humanity a great service by discovering a cure.

 

[Jazzer]

That's simply not true Ed. Some of us have really bad PTSD and that makes reaching out to people almost impossible. Especially when we are reeling from loss of partners, jobs, homes, lifestyles, debt etc. When you have taken a massive hit in life and can't see any hope at all, drawing attention to yourself and your problems is very hard.

I lost virtually everything - apart from my family - and what you have said here Bam is precisely the point.
Give me my silence back, my health back, and pass me my beautiful precious gleaming trombone, and I'll find a way to hire a concert hall and tell the world.

 

[Jazzer]

The God you need to thank is in your heart.

I've always liked your attitude 85, and enjoy your posts, but of course, I have not one pickled clue just what this means my friend. x

 

[Bam]

Took me four to five years just to begin thinking about living the future

For some that is simply too long to suffer just to get to a place where you are about 10% as happy as you were before this shit hit your frontal lobes like a freight train.

You still have a life to live and be thankful for.

People should get the choice on that.......And they shouldn't be shamed in to feeling ungrateful for not wanting to live a seriously unpleasant and compromised existence.

 

[85dB T]

I've always liked your attitude 85, and enjoy your posts, but of course, I have not one pickled clue just what this means my friend. x

Yes you do, you just enjoy being stubborn (a wild guess). We share the same good attitude and you have a good heart. Just keep it simple, "God is Good" and be thankful for all that is "Good".

this never gets old:

 

[85dB T]

For some that is simply too long to suffer just to get to a place where you are about 10% as happy as you were before this shit hit your frontal lobes like a freight train.
People should get the choice on that.......And they shouldn't be shamed in to feeling ungrateful for not wanting to live a seriously unpleasant and compromised existence.

If you're referring to taking ones life this is always the wrong choice regardless of how much suffering. Don't worry, we all die whether we choose to or not (no need to hurry). Life is incredibility rare, unique and baffling. Of all the known universe we have yet to find life elsewhere. Even if you suffer, live it out. Don't throw this miracle in the garbage no matter how bad you think it is at the time.